Today is a day to celebrate & honour all those with congenital heart disease, their families, & the health professionals who look after them. And of course you! Without your support we wouldn't be able to do what we do.
Here are the smiling faces of Jon (CEO of Tiny Tickers) & Zoe. Zoe's heart story has a happy ending. But it's important to remember not all do. CHD is responsible for up to 1 in 13 of all infant deaths. That harrowing statistic drives all we do here at Tiny Tickers. Today we are reflecting on that and redoubling our efforts to help save lives.
Jon says: "My beautiful daughter, born with a great big hole in the middle of her heart. 8.5 hours of surgery to sew things up & construct new valves. We are forever grateful for the NHS heroes who saved her life."
We were delighted to have been involved in this important research project, led by Dr Judith Johnson & the University of Leeds, to create the first ever world guidelines for sonographers communicating unexpected news during pregancy scans. I shared my own experiences on BBC Breakfast last month. You can catch up here.
This project has meant a lot to me as I have personal experience of being a parent being on the receiving end of unexpected news – my daughter’s heart defect was first spotted at my wife’s 20 week pregnancy scan.
The way you are told about your baby’s potential condition can have a profound impact on what follows and how you as expectant parents cope with it. Our sonographer did a good job – she was honest, clear and compassionate in the way she told us about our unborn baby’s heart.
At Tiny Tickers, we hear the full range of experiences from the families we support, and also hear from sonographers about how tough it is to suddenly come across a possible problem and have to let expectant parents know without any time to prepare.
This research project has seen sonographers, psychologists, charities and parents with lived experience combine to create the world’s first set of guidelines to help sonographers with the really, really challenging task of communicating unexpected news. It’s really important work and we’re delighted to have been involved.
We are so grateful to all of you who support us week in, week out, month after month. Your support means we are able to do so much more to help babies with serious heart conditions, their families, and the NHS heroes who look after them.
We wanted to drop all of our supporters a note to say a big thank you for your continued support during these difficult days. And I do hope you are staying safe and well.
We are trying our very best to keep going - however we're a tiny charity and as a health specific organisation, we are not entitled to any of the UK Government funding packages. We continue to provide existing services where possible. We continue to offer training materials and resources to health professionals. We continue to be a voice for patients and parents, and to work with the NHS and service providers. We continue to offer information, advice and support to families.
The Coronavirus pandemic has forced us to change the way we help our beneficiaries. Unfortunately, we've had to pause three of our key projects due to Government guidelines and to enable NHS hospitals to focus on their critical role responding to the pandemic. For the time being, we have suspended face-to-face sonographer training, and have paused our projects placing pulse oximetry testing machines and situs dolls in NHS Trusts. We remain fully committed to these key projects and will resume them as soon as it is right to do so.
All our other work continues, and we are also working on new ways to help health professionals and patient families at this most difficult time. This includes developing new digital resources for sonographers and support services for families.
A baby is born with a congenital heart defect every two hours in the UK - Coronavirus doesn't change that fact. Much of what is normal in our lives may have shut down, but our cause has not closed. Therefore, Tiny Tickers remains focused on doing what we can to help babies with CHD, their families, and the health professionals who look after them.
Once again a huge thank you for helping us to keep supporting those facing the challenges of congenital heart defects at the worst possible time.
As you have very generously supported us in the past, we wanted to get in touch to let you know how we are approaching the coronavirus pandemic - the steps we are taking to help families; keep our services running; and to look after our staff.
Firstly these are very uncertain times for everyone. We are bracing ourselves for a big impact in the coming weeks but our priorities are to keep supporting patient families; to continue our services for health professionals; and to look after our colleagues. It will only be through the generosity of our supporters and donors, like you, that our services will keep running.
Even though we are facing a huge public health emergency, a baby will still be born with a serious heart condition every 2 hours. That fact remains. As does the fact that we will now need to do even more to protect them, their families, and the health professionals that look after them, over the coming weeks and months.
Here are some of the things we’re doing:
We are liaising with the NHS and others to offer the latest guidance to families affected by congenital heart defects. We understand this is a worrying time and we are diverting as much staff time as possible to ensure we respond to queries and keep providing timely and accurate information via our website and social media channels;
Following the latest Government advice, we have decided to suspend all face-to-face sonographer training for the foreseeable future. Our online training resources remain available and we will add to these in the coming weeks. Our medical staff may also be deployed into the NHS during the next few weeks - and we support this completely. We stand by all NHS staff at this difficult time and send them our very best wishes as they work selflessly and tirelessly on behalf of the public.
We’ve cancelled or postponed all other non-urgent external meetings and visits for the time being. Unfortunately, this means we will not be facilitating staff and supporter trips to hospitals or schools during this period;
Our small team of six staff all work from home, so we are well-placed to continue most of our operations as normal. Our staff are all up to date with the latest advice and we have stopped ourselves from meeting in person for the foreseeable future. Flexible working plans have been put in place in the event of school closures and/or illness among the team. We’ll do the best that we can to look after each other, and to keep things running smoothly, basically.
We are urgently assessing the potential impact of coronavirus on our funding, and hence why we are taking the time to get in touch with all past, future and current funders. With mass participation events such as marathons, corporate and school fundraising activities being cancelled or postponed, we’re preparing for tough times. We are limiting non-essential spending now so that, if there is a significant drop in our income as a result of the virus, we are as well-placed as possible to continue our key operations and services.
We don’t receive any statutory funding and, as a small charity, we don’t have very deep pockets. We may well find ourselves relying on our wonderful supporters more than ever over the coming weeks but we know we will survive. We might be small, but we have huge determination and passion in abundance!
Thank you for your support and our very best wishes. Take care and stay safe,
Okay, confession time. Some charities’ annual reports are dull. They don’t exactly entice you to curl up on the sofa with a cuppa and a few biscuits in eager anticipation of flicking through them. But ours isn’t like that. It really isn’t.
As well as going through our accounts, it also talks about our main activities and the impact we’ve had. We tell patients’ stories, and take the opportunity to say a great big thank you to all our supporters and funders. We’ve tried hard to make it a good read so, if you can spare half an hour to look through it, I guarantee you will learn more about us and consider it time well spent.
Our future will see us doing more of the same great work we are already doing – work that has helped increase average antenatal detection rates of CHD from 23% to 50% in the 20 years we’ve been around. Plus a whole raft of new work that we’re eager to get stuck into as soon as funding and resources allow.
And that’s where we rely on you, our incredible supporters – put very simply, without your support we can’t achieve any of that. So we remain incredibly grateful to every single person, company or grant-maker who donates, fundraises and supports us in any way.
However small you think your contribution to Tiny Tickers is, I can assure you, it’s absolutely vital. A sincere and very large thank you from all of us.
Project Reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.
If you donate to this project or have donated to this project, you will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.
Get Reports via Email
We'll only email you new reports and updates about this project.
Give the gift of stability in a time of instability. Set up an automatic, monthly gift now and get matched at 100%—because the COVID-19 pandemic has hurt us all, and it will take all of us to overcome it. Terms and conditions apply.
Monthly giving is as easy, safe, and as inexpensive as a Netflix subscription. Start a monthly donation to Tiny Tickers today and get matched at 100%. Terms and conditions apply.